Alan Westwood is 84 and suffers from late stage dementia. He also has type 2 diabetes, which compromises his immune system, and atrial fibrillation for which he is receiving digoxin (https://www.nhs.uk/medicines/digoxin/about-digoxin/)
His advance decision, drawn up some 20 years ago, states that once he has lost capacity, he does not want any surgical procedures whatsoever, even if necessary to save his life. It specifically states that his father died in surgery and this has made him inherently fearful of hospitals and operations.
He is being cared for by his wife and daughter. He has an adapted room in their family home.
Alan has recently taken to wandering outside the house. Sometimes the family do not realise he has slipped out until they notice him in the garden, unsupervised. A few days ago they found him barefoot, his dressing gown caught in a blackberry bush. He was bleeding from scratches and had a thorn in his foot which they managed to remove.
The next day they noticed that his foot had become red, warm, noticeably swollen, and was painful for Alan. His wife and daughter took him to the GP the following day. The GP diagnosed cellulitis and prescribed the oral antibiotic flucloxacillin.
The antibiotic was ineffective, and Alan’s condition deteriorated over the next 48 hours, with high fever and general malaise. He was taken to A&E and then admitted for IV antibiotics, which were unable to penetrate the deep layers of infection in the fascia. A skin biopsy was performed which showed necrotising fasciitis, needing urgent surgery.
Since necrotising fasciitis can spread rapidly, patients must get surgery done very quickly. Even with treatment, up to 1 in 5 people with necrotising fasciitis die from the infection. Up to 1 in 3 people who had both necrotizing fasciitis and streptococcal toxic shock syndrome at the same time died from their infections. (https://www.cdc.gov/groupastrep/diseases-public/necrotizing-fasciitis.html; (17) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7885656/). In such cases there is also high risk under anaesthetic.
After carrying out an urgent review the surgeon decides that the infection has spread so rapidly and is so deep that debridement would be ineffective, however it is currently confined to the distal lower leg. Consequently, he recommends below knee amputation to prevent further spread to the upper leg.
The swabs show he is MRSA negative. He has been started on urgent Piperacillin-tazobactam IV 4.5g 8 hourly plus Clindamycin IV 1.2g 6 hourly.
Alan’s GP is aware of his advance decision and has communicated this to the MDT. However, Alan is now visibly upset about being in such pain. From his cries and non-verbal cues it is clear that he is in agony, seeming to beg them to do something with his body language and eyes.
Multimodal pharmaceutical solutions, including opioids, have been tried urgently but none have lowered Alan’s pain sufficiently (https://academic.oup.com/painmedicine/article/11/12/1859/1943985). (19) Both cellulitis and necrotising fasciitis are contraindicated for localised nerve block since the block goes into the fascia and could further infiltrate the infection.
Alan’s case is now under urgent discussion by the MDT. His family are firmly of the view that Alan’s dementia is so far advanced that his apparent desire for pain relief, which realistically can be achieved only by amputation of the infected leg, has no legal or moral force and should be ignored in favour of his clear advance decision to refuse surgery, which would now be fatal to him.
The family’s argument is, tragically, that Alan is not only no longer the person he was, rather his dementia is so bad he is no longer a person at all.
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What should be done for Alan? As a pharmacist you have the opportunity to discuss this on ward rounds; how would you exercise your professional judgement to make and argue the most ethical decision? How would you deal with any disagreement in the MDT?
Advance Decisions: Background
https://www.bmj.com/bmj/section-pdf/186407?path=/bmj/339/7732/Analysis.full.pdf
Note: This issue was developed with Vanessa Peutherer, healthcare ethics scenario writer.